What’s wrong with ME?

Chronic fatigue syndrome and ME, a diagnosis that can send shivers up the spine of the most hardy of patients. Instant relief at the diagnosis followed by total dismay at the vague advice on how to get better. Welcome to the complex world of fatigue syndromes.

Graded exercise, according to some sufferers is one of the most patronising and pointless pieces of advice to give, alongside such helpful comments as “aren’t you a bit depressed?” and “it won’t last forever”. Sadly it can last forever and as one patient told me “I’d rather have cancer, at least people would know what to do”.

The bad news if you’ve been suffering for more than five years, it’s rare if you go on to make a full recovery. If you are suffering at the moment, take heart (if that’s at all possible) you are in good company; Florence Nightingale, Randy Newman, Flea from the Red Hot Chili Peppers, Blake Edwards, Cher, Stevie Nicks, Michael Crawford, David Puttman and Sir Andrew Lloyd Webber are all or have been sufferers. What have these people got in common? – well they’re hardly couch potatoes are they? Overwork and burnout would be another common theme.

Branded as Yuppie Flu in the 1980’s, the history of “ME” dates back to the 19th century. Neurasthenia and polymyalgia were described in medical journals pre-dating this time, together with vague symptoms of anxiety, aching muscles, depression and neuralgia.

In 1955 it came to prominence at The Royal Free Hospital where nearly 300 staff were affected by the illness and 255 were admitted to hospital. The first few cases were labelled as glandular fever so as not to spread panic and alarm as it became clear this was something else entirely. There was certainly organ involvement of the central nervous system, lymphadenopathy (enlarged lymph nodes) and fever. Other symptoms included headache, sore throat, malaise, lassitude, vertigo, pain in the limbs, nausea, dizziness, stiff neck, depression, diarrhoea and tinnitus. One of the most prominent symptoms was muscle spasm which seemed to justify the term myalgic. The encephalomyelitis part is to do with inflammation of the brain and spinal cord. More in depth investigations showed little. Cerebrospinal fluid was normal and ESR was not usually raised. Lymphocytes were however found to be raised which could have indicated a virus of unknown source. Most of the sufferers were female due to the amount of women working in the hospital at that time. It all ended in mystery and few concrete answers came out of the investigations.

In the 1960’s and 1970s epidemic cases were called mass hysteria and by and large it was put in the box of psychiatric disorders. It took until 1978 for The Royal Society of Medicine to recognise “ME”as a disease with an organic base. In the 1990’s researchers found DNA sequences similar to the HTLV-II retrovirus in some fatigue patients. This could potentially be passed not only genetically but from mother to child in breast milk and cause myelopathy. After initial excitement this data was later refuted.

Bringing us up to date, ME/CFS is now a fully recognised medical condition, however there is still little formal protocol as to how to treat patients. This is partly because sufferers need to be treated individually. Failing to understand this basic point and putting all sufferers in the same box is the first mistake. Not taking a thorough medical history and timeline of the patients journey to ill health is the second mistake. Within that, many clues lie as to why the patient became ill in the first place.

Sadly a ten minute appointment at the GP won’t touch the sides which is why CFS patients have to return to their GP over and over as the symptom list can be lengthy. No ones fault, but that’s the reality.

Many patients with Lyme Disease, hypothyroidism, glandular fever or severe Vitamin D deficiency could have the same symptoms as those of ME/CFS. To mistake one for the other can lead to confusion. Whatever we agree or don’t agree on, CFS is usually found in Type A personalities, overworked, overachievers and often after a trigger event. There will usually be a build up of issues with either a virus, travellers diarrhoea, overuse of antibiotics, death, divorce, loss of work, burnout through overwork and then a trigger event. The trigger event can be something fairly small like a cold, and then the patient is finally “taken out” like a wounded animal shot with a tranquiliser dart and down you go, literally and metaphorically.

Fatigue syndromes rarely come out of nowhere, there is always back history. The full symptom list is overwhelming but may include:

Problems with thinking

Worsening of problems with standing or sitting

Tender lymph nodes in the neck or armpits

Sore throat

Irritable bowel syndrome

Night sweats

Sensitivities to foods, odours, chemicals, or noise

Fibromyalgia

Inability to cope with any kind of exercise

Unremitting fatigue

Headaches

Low grade fevers

The trouble with these list of symptoms as you can see is that they could relate to other illnesses. It’s a complicated business.

One of the problems is the amount of time needed to give to one patient and go through symptoms. It is almost impossible for a GP in ten minutes to assess what the patient needs with this amount of complexity. One of the frustrating things is in CFS/ME patients everything needs to be checked. When I say everything I mean… well everything. That is expensive and time consuming but no stone can be left unturned.

Taking time to look at why the patient became ill is very helpful in getting the patient better. Psychological support of one type or another is key as well as nutritional intervention and a vast array of blood tests. When I work with GP’s they are often surprised at the list of bloods I suggest but realise how important it is to start to rule things out. I think it’s important to stay fairly orthodox. Time and time again I’ve seen people being pulled in directions that have not helped them, desperation making them vulnerable.

However it needs to be a multi system approach pulling in the best people that you can find. Patients should get better, the ones that don’t, and I’ve seen people who’ve been ill for 15 years or more, need to ask some hard questions. Are they wasting their money with people who don’t know what they are doing? You can’t just shove a lot of vitamins at this and expect to get better. Viral studies are far more relevant than live blood analysis for example. Some tests are helpful and some are quite frankly bonkers. The gut microbiome in my humble opinion is key in understanding what has gone wrong. In all my CFS patients their gut flora has been damaged along the way and not helped with immune system response, production of serotonin, IBS symptoms etc.

There isn’t enough space to give you any hints or tips on how to recover as everyone is so entirely different in their story; why they got ill in the first place, their personality and recovery speed. Whatever you do choose, start with your GP, and then possibly there will be consultant involvement of some shape or another. Get good support in talking therapy if at all possible. Even if you think you don’t need it trust me after a few years of illness it’s all you can think about so talking therapy is key. The extra burdens of being on benefits and trying to fill out forms is also another hurdle. I know long term sickness benefit is heartbreaking for those overachievers who are living on barely nothing and no extra money to do things that might make a huge difference. As Lady Gaga said in her recent Netflix film Five Foot Two, it’s all right for me with a team of people to help me cope with fibromylgia – what about those that can’t access that kind of help?

Because it’s so complex I offer a two hour consultation and work closely with GP’s/Consultants and I try where I possibly can to check everything that is in my remit. I will leave no stone unturned and the patient’s story is very important. There is usually a golden nugget of information there which can give clues as to what has happened. That, quite frankly, is not a bad place to start.

If you would like to discuss your particular CFS/ME needs with Kate to see if a consultation might be helpful, please call 01323 737814/310532. For more information on Kate go to www.katearnoldnutrition.co.uk

About the AuthorKate Arnold

Kate Arnold Nutrition is a nutrition consultancy specialising in gastrointestinal health and fatigue disorders. Kate is passionate about an evidence based, patient centred form of healthcare. She has a special interest in the pathophysiology of obesity and how alterations in the gut microbiome can lead to weight gain and other medical conditions. Kate is a vocal opponent of nutrition pseudoscience and works closely with GPs and consultants where possible. With over twenty years experience Kate has worked with a vast range of clients including charities, The Princes Trust, schools, local government, music and media personalities. Kate is the spokesperson for an award wining yearly campaign for Dulcolax, resident nutrition consultant for Wellbeing magazine and has a regular column in Gastro magazine. Kate is also a Map My Gut and SIBO certified practitioner.